Click here to listen to a very important discussion/interview regarding my experiences with DCIS, the problem with mammograms and the “Dilemma of Over-diagnosis.”
Thank you Connie Bowman for shining the light on this very important topic on your podcast “HAPPY HEALTHY YOU”!
About Donna Pinto
I am originally from New Jersey and moved to Los Angeles with my family at age 12. After graduating from San Diego State University with a BA in Journalism, I had a short-stint in magazine advertising sales before landing my "dream job" with Club Med. For two years I worked at resorts in Mexico, The Bahamas, The Dominican Republic and Colorado. My husband Glenn & I met in Ixtapa, Mexico and we embarked on a two year honeymoon around the world. This was also a research project for a book we wrote called "When The Travel Bug Bites: Creative Ways to Earn, Save and Stay Abroad." I am also the author of a quote book for new graduates -- "Cheatnotes on Life: Lessons From The Classroom of Life." In 1997, we settled in San Diego and I was blessed to work part-time from home for non-profit organizations while raising our two boys. In 2010, a DCIS diagnosis changed my life. DCIS 411 is the culmination of my on-going journey and discoveries.
thanks so much Donna, for a wonderfully informative interview. You’re a true advocate for questioning the ‘status quo’ surrounding a DCIS diagnosis. Please keep up the great work.
I’m just writing to say that, in my situation, “simple surgical excision” was well-advised and straightforward. I definitely support your advice of enlisting Dr. Lagios, if possible. He’s the gold standard!
I was diagnosed with ADH, but Lagios’ review of my pathology slides revealed it was indeed DCIS (intermediate grade, with necrosis), and he advised a simple surgical excision.
I know everyone’s response is unique, and each woman should follow the path that feels right to her, after researching options available. In my case, Lagios’ upgrade from ADH to DCIS prompted some serious reflection! For about a year, I researched the primary literature, and discussed my options with my family, friends, and the truly excellent surgeon to whom I was referred initially (for ADH, which turned out to be DCIS). I’ve been very fortunate, in having a wonderful surgeon, who has helped me to navigate this process, including the current literature about DCIS. After all this consideration, I had a surgical excision of the DCIS tumor.
After the surgery, I requested that the slides be sent to Dr. Lagios. The margins were clear, but on one edge were extremely small (<<1 mm). So, I just (last week) had another surgical excision, to achieve wider margins. I hope that's sufficient to bring me to a Van Nyes score of 6 or 7. I guess I'll find out.
All this is to say, I definitely second your advice to enlist the help of Lagios. Though, it's not a given that he'll recommend a less invasive approach. After my first surgery, I was so hoping that the <<1 mm margin would be ok, but after speaking with him, I realized it's insufficient, and I needed surgery again.
Over the past year +, I've realized that DCIS is an extremely tricky diagnosis. Based on my experience as a patient, the only clear advice I would have is to enlist Dr. Lagios' advice, on slides from a biopsy or surgery. His clear advice on treatment plans may be less invasive, or more invasive, that you had imagined. [I have no association with Lagios; I've just benefitted from his advice.]
Thanks for sharing your story Jen….it goes to show that a 2nd opinion with Dr. lagios is well worth the time and money. It’s the peace of mind that we need to know we are making the right deicision based on accurate diagnosis of pathology. I had 3 totally different pathology reports — from low grade to int-high grade with comedo necrosis. I had no doubt about going with Dr. Lagios very thorough evaluation of all the slides…he said it was all indeed LOW grade which confirmed my decisions….and I have never had a doubt in my mind that I too made the right decision. Again, thanks and best wishes for your continued health and positive spirit. – Donna
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Administration of natural estrogens has numerous benefits in tumor prevention and therapy even in BRCA mutation carrier women as there are no toxic effects even in sky-high doses. All physiologic cellular functions are strongly upregulated by estrogens, while malignant tumor cells are recognized and killed in a Janus-faced manner (http://goo.gl/EsB1bK).
Dr. Zsuzsanna Suba